Research Ethics in Patient Centered Outcomes Research

Research Ethics in Patient Centered Outcomes Research
Center for Surgery and Public Health

On 29th June, 2018, the research team of PCOROS (Patient-Centered Outcomes Research Oversight study), a PCORI funded project, successfully conducted a Symposium at the Petrie-Flom Center of Harvard Law School. Approximately 115 people attended the Symposium and participated in active discussions. The purpose of the Symposium was to share the recommendations that were the outcome of this 3-year long project, ending in August 2018. The recommendations were focused on improving practices around ethical oversight of patient-centered outcome research (PCOR)- they identified areas of PCOR oversight that might require additional guidance from respective agencies, intended to help IRB professionals, investigators and patients who participate in these studies in non-traditional roles as researchers, in meaningfully getting involved in PCOR.

Symposium commenced with the study investigators sharing findings from the study including the recommendations which were developed through a 4-round Delphi Process with 17 experts, ranging from bioethicists, IRB professionals, investigators, patient representatives, funding organization representatives and other similar fields. Our panel members also consisted of individuals representing patient voice, IRB, PCORI, investigators conducting PCOR and ethicists.

For detailed information about the Symposium, please check out the following links:

http://petrieflom.law.harvard.edu/events/details/putting-patients-at-the-center-of-research

http://blogs.harvard.edu/billofhealth/2018/06/21/pcor-ethics-conduct-patient-research/

http://blogs.harvard.edu/billofhealth/2018/06/22/investigating-conflicts-of-interest-in-patient-centered-outcomes-research/